APDC statement regarding the NDIS
Review & NDIS Bill Amendments 2024 

Dear friend,

 We wish to introduce ourselves as the Australian Psychosocial Disability Collective, a grassroots lived-experience advocacy group campaigning to protect the rights of people with psychosocial disability in the context of the NDIS. 

 We are appealing for your support in our struggle to maintain and enhance the important role of psychosocial support and care in NDIS, and prevent likely changes in this area. These changes would work against the interests of people with psychosocial disability.

 Following the Independent NDIS Review, a new bill (Getting the NDIS back on track 2024) has been introduced into parliament which includes substantial changes to how the NDIS will operate in future.

Whilst further details have yet to become public about how these changes will alter the NDIS experience for participants. It’s clear the NDIS Bill amendments do represent a fundamental redesign of many aspects of the NDIS; including access, eligibility, how people will be assessed, and the type of supports subsequently provided within an NDIS plan. 

It is APDC's concern that the proposed changes contained in the NDIS Amendment Bill will unfairly target the level of support offered to people with a psychosocial disability and the nature and quality of services provided (if any).

 We believe that the proposed NDIS amendments are aimed at watering down the range and depth of service provided, making the scheme less personalised and more generic and massively reducing participants' choice and control. Many people with psychosocial disability have been receiving life-changing, practical and meaningful support through the NDIS.

 The NDIS Bill amendments will require new psychosocial NDIS participants to be placed onto a yet-to-be-designed and untested psychosocial disability early intervention pathway with a narrower range of specified supports and practices.  

At a wider level, yet-to-be-established “foundational supports,” run at state and territory levels by block-funded large NGOs promoting the notion of “recovery-based” support services, have the potential to further limit access to the NDIS for people with genuine and substantial needs that will be unable to be met under these service models.

It is also feared that some people with psychosocial disability could be forced off the NDIS altogether. The foundational supports are said to be a means to address burgeoning needs outside the NDIS system, and whilst the Minister has stated that present participants would keep their NDIS plans, we are concerned this is only in the immediate term, and that current psychosocial participants will find themselves targeted yet again in a year or two.

 We are alarmed that psychosocial disability is being subjected to discrimination and downgrading in the NDIS system. This is an incursion on our human rights under the United Nations conventions on the rights of people with disabilities (UNCRPD), of equal rights to live and participate in the community. We maintain that psychosocial disability is a very real and permanent disability for the purposes of the present NDIS eligibility criteria and deserves equal rights under the NDIS. 

 Psychosocial disability can be defined as the often severe and enduring consequences of mental ill health, combined with other social, economic, cultural, and environmental factors, together with co-occurring disabilities and health conditions, the effects of trauma and stigma, and other complex issues. It is important that psychosocial disability not be conflated with mental ill health in the NDIS context because mental ill health is only one part of a much broader picture - both in terms of lived experience and the combined severity and pervasiveness of the impairments.

 Psychosocial disability is complex, multi-factorial, and affects people in varied ways. It impacts virtually every aspect of life; including employment, education, relationships, social interaction, community participation, cognition, communication, self-care, mental and emotional wellbeing, and maintaining energy and motivation. Psychosocial disability tends to be linked to co-occurring serious physical health conditions. Such problems, exacerbated by stigma and discrimination, contribute to high levels of disadvantage, including poverty, housing-stress and homelessness, social isolation, food insecurity, disenfranchisement, substance issues and, sadly, a high incidence of suicide compared to the population averages.

 Many people with psychosocial disability also say they were poorly served, harmed and even had disabilities caused by mental health treatment and “support” systems. The breadth and depth of needed supports, provided under the NDIS, are simply not available in mental health services. Many participants experience the clinical mental health system, grounded in a medication-based medical model, as harmful, traumatising, denuding of hope, coercive, judgemental, stigmatising, and systemically violent. 

 The Australian Psychosocial Disability Collective has written an Open Letter/ Petition to NDIS Minister Mr Bill Shorten, asking him to protect the rights of people with psychosocial disability in the NDIS. 

 The Open Letter calls for the NDIS to fully maintain and further develop services for people with psychosocial disability under the scheme, with genuine co-design with participants on any changes. The petition on Change.org has so far been signed by 4010 people.

 The letter said:

 “We are concerned about the impact changes will have on our lives; how you will make the decisions about who gets support from the NDIS and who does not; and the nature of the services, if any, that will be offered to us as alternatives. We are seeking that the debate about changes to NDIS eligibility for people with psychosocial disability be undertaken in a transparent and public manner.”

 We, the Australian Psychosocial Disability Collective, personally gave evidence to the Independent Review Panel on the NDIS; and also made a submission written collaboratively with a group of Occupational Therapists. Our recommendations were apparently ignored; instead, powerful mental health lobby groups had their (very harmful) recommendations taken up. 

 Organisations proposing so-called “recovery-based” NDIS service models are, in many ways, promoting an inappropriate and paradoxical approach in the NDIS context. When people are assessed as having severe and permanent disability, qualifying them for the scheme, recovery is complex at best and virtually intractable in many instances. So many of us have been trying our hearts out for years, or even decades, to be well enough even to survive, let alone function. Sheer day-to-day maintenance is often a significant achievement, and there are big fluctuations. 

 Since the late 1990s, the mental health consumer/survivor/lived experience movement has been leading discussions about the concept of recovery in mental health in holistic and empowering ways. Many advocates say service providers have co-opted the hard-won concept of recovery over time, and there is a clear danger this co-opting trend could be replicated in the NDIS to the detriment of participants.

 Recovery is a notion that lived experience advocates tend to describe as personal recovery, in which a person gains more control over their life circumstances and trajectories through a range of inputs. It is not necessarily about clinical recovery, a cessation of symptoms, or the alleviation of the severe life challenges we face. 

 Where support services have over-blown or even coercive presumptions around recovery for participants with psychosocial disability, this can erode the provision of sustained and person-centred services and cause more harm or even trauma. These supports are supposed to be informed by the expressed needs of participants, under the guiding principles of maximising choice and control by participants, and our right to lead “an ordinary life”.

 There is a need for ongoing, trustworthy, holistic and individualised services based on a social model of disability. Services that support, empower and resource participants in their life in the community, according to their needs and wants - with an emphasis on the choice and control that was a key imperative of the NDIS’s original design.

 NDIS supports, when working well, can help the person with daily living support and practical tasks, such as housework and shopping, meal preparation, transport, attending appointments, meeting with friends or family, participating in groups and activities in the community, managing from day to day, and providing personal support in difficult times (including overnight when required). There are also capacity-building supports available through the NDIS, and these, too, have been life-changing for many psychosocial participants – enabling access to effective and efficacious services that are simply not available through the mental health system.

 We reject the assertions of the NDIS review panel report (based on influential mental health lobby group recommendations), which assumes most psychosocial disability can be addressed by an early intervention pathway that will somehow lessen the impact of this disability on the lives of most participants. Psychosocial disability is a very real disability and should be treated with equal rights under the NDIS Act. 

 We appeal to you to support our calls that our perspectives be genuinely considered in discussions on policy and programming for any changes to the NDIS likely to affect the area of psychosocial disability. And that any new changes and developments are made with full and transparent co-design with a broad range of participants. If psychosocial participants are not included in genuine co-design, then the impact on current participants and future applicants is likely to be devastating and potentially life-threatening.

Yours truly,
The members of APDC